Weekly Blog No 80 – Cancer Update

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I have not been keeping up on my weekly blog due to ongoing issues. My symptoms are relentless sometimes and can be from morning and continue throughout the night.

2 weeks today, I had a colonoscopy and I am waiting for the biopsy results. The bowel prep wasn’t wonderful but eating lighter meals for a few days before the procedure certainly helped. In Canada, you don’t remember the procedure that you had, which I thought was amazing. In the UK, even though the right drugs are given, you’re very much awake and you can feel some discomfort. I would love to be time machined back to Canada for this procedure. How can 2 country’s be so different. The GI Consultant knew I had a bad experience before in UK and he saw it, as a challenge to wipe away my bad experience. He was amazing and very compassionate.

The following morning I was seen by a Net Consultant not my usual Net Consultant and I will say he was greatly missed. Let’s just say fish & chips can work in harmony, where this one was more of a case of salad & chips, not so harmonious.

After digesting my salad & chips appointment, I did telephone the department and ask for a fish & chips in future.  I don’t need to be considering side orders if  it has no beneficial impact to my health or immediate care. You may think a side order of beetroot is good for me but it’s not advantaguous to me

I did walk away armed with medication and more investigations to be undertaken. I will start scans again next weekend, let’s hope there is a positive outcome

In the meantime, the Net Specialist Nurse arranged for a Macmillan Nurse to see me for symptom control. She was a breath of fresh air. More like caviar & chips lol. She has made further changes to my meds, including ones I already commenced last week.

She is arranging for a Specialist to see me at home to explore some more of my symptoms. The Macmillan Nurse is going to check in with me again early this week. I did thank the Net Specialist Nurse because local support is required when symptoms are ongoing.

My Family Physician has also referred me to be seen by a Gynaecologist on the request of the Net Team. I had a hysterectomy early 30’s but retained my ovaries. I’m having some pain in the pelvic area, we know  I have disease in the pelvic area so we going to investigate carcinoid ovary or it could just be a case of cysts on the ovary’s. Let’s see what happens.

Overall there are lots going on, I definitely  feel like I’m declining, however I look ok. Appearance is not everything. My medication represents a very sick person but it’s not out on show. Therefore there is no telltale signs. I like to think I just get on with it but having the Macmillan Nurse acknowledge your illness certainly makes you more aware that you really are ill and that is why these people are here. I will stress these visits are only for symptom support not end of life support.

Here’s a link to the Macmillan Nurse and the service they offer. They are the most compassionate caring people. My Macmillan nurse even  hugged me goodbye on out first meeting. She wanted to keep Lottie too but that wasn’t going to happen. Lol

Weekly Blog No 79 – Aunts

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I am lucky to have my many Aunts in my life. My Aunts have always been good to me in one way or another, however I have consistently maintained contact with my Aunt P who is also my Godmother. For years we have kept up the snail mail service with cards etc. (I do believe I have every letter and card she has ever sent me) I know, I’m a sentimental hoarder. We have also developed the art of a long phone call, it’s so easy when conversation flows. 

She is a wonderful, caring and supportive individual. Her love has never waivered and I’m truly grateful to her and her family. I have learned things over time from her, how to make good roast potatoes, my love for terracotta pots, teapots & tea leaves and finally good authors.

Yesterday my aunt and cousin came to visit me. It was such a lovely afternoon, we ate a cold lunch followed by cake. However on this occasion, no teapot was available as its still packed in my Rocky Mountain of Canadian boxes. As per normal, our conversation was flowing like we’ve never been apart. Three woman putting the world to rights. 

Thank you to all my Aunts. Im lucky to have so many amazing inspirational woman in my life. Love to you all. ❤

Weekly Blog No 78 – Cancer Appearance

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This is just my line of thought but I am sure there are other people who can identify with this. Carcinoid Cancer can be a blessing in regards to your appearance as the majority of us patients don’t experience the physical signs of cancer, weight loss, hair loss and generally looking unwell. I use the word ” blessing” because in my eyes it is a blessing, however people make assumptions reflecting on your appearance.

I have gained weight due to the cancer and the overload medication hasn’t helped. I recently had to get my wedding ring cut off and resized due to weight gain. Whats more I was shocked and on the other hand not surprised that it had to be increased in size by 6 ring sizes, yes 6.  I’m lucky to have long blonde hair that I can style. Furthermore I have black rings under my eyes but that can be concealed with make up. I do have a tendency to not dwell on my illness, therefore its less obvious to some people.

I believe unless people can see the physical signs of a generic cancer you don’t have an illness. I do have a small network of people who thoroughly understand what I am going through on a daily basis.Trust me, I’m feeling the daily effects of cancer and no day is the same, a good day in my eyes maybe completely different to you. I can get excited over achieving the laundry or writing an email to someone. Tasks that I was more than competent on doing with my eyes closed.

This is not about my daily struggles, this is about people assuming your ok because of how you look. Dont make assumptions, communication is key, speak to the patient, and learn what they are having to deal with. It’s the same in regards to interpretation of support but I will save that one for another day.

Weekly Blog No 77 – Bullet Journal

Image from pinterest.

Image from pinterest.

I’ve  always used a diary but over the last few years, I’ve found shop brought diaries are not really working for me in one way or another.  I’m ok with technology but inputting everything into my phone is a weakness for me, I can’t seem to adapt to inputting all my info into my phone. I needed a solution to record all my important information into one tool. Furthermore I wanted Mr Zebrakat to be able to retrieve my tool that stored all my information like, GP details, current medication, recent op’s and recent appointments. A one stop shop tool for us both.

And then, I came across the answer to my problems whilst searching the internet. My new tool was going to be a bullet journal. Here’s the definition “The Bullet Journal is a customizable  and forgiving organization system. It can be your to-do list, sketchbook, notebook, and diary, but most likely, it will be all the above”.

I was amazed to see that there’s a phenomenum of bullet journalists on social media. A very creative community letting their artistic  organizational and disciplined flow. I read a website called “bulletjournal.com”. Very inspirational. Bullet journals seem to be action by all ages as a resourceful tool.

This week I’m going to attempt a bullet journal and see how I get on, I want to purge all my information into one book. I was wondering if any of my followers use a bullet journal?

Weekly Blog No 76 – Phyiscal and Mental Scars. 

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As a cancer patient you are left with both physical and mental scars. Everyone deals with these scars differently and for me I have evidence of both. Firstly I don’t have tattoos but you could say my chest and back is considered to be like a scar sleeve.  I have various sizes and all of them are of the same colouring. There is no particular art or precision taken when cutting the skin by the surgeon but why would they to be honest.  I do have, a cute dotted line on either side of my largest scar, were the staples were taken out. I think I had 50 plus staples to my longest scar.

Am I bothered about my scars, my answer is no because they all tell a story. Do they look pretty, maybe not to some people but who cares. The fact is, I do have them and each one has improved my well being at some point.

That’s the physical scars let me discuss my mental scars. My mental scars are not from the cancer diagnosis but from medical procedures undertook over the years. I’ve had two or three episodes that have showered me with fear. I always go into these procedures with my head held high but really I’m a nervous wreck. I never fear the outcome/diagnosis it’s the procedure that has me every time.

Let me explain, in approx 2006 maybe earlier I had a colonoscopy and for some reason I nearly touched the ceiling with pain. I don’t know of anyone as yet that has experienced pain with this procedure on the bowel that hasn’t been operated on.  This first mental scar has been taken with me on all future medical procedures.

Here’s the story of my biggest mental scar and the one that still haunts me to this day. Let me explain the JP drain, see the attached photo below of a Jackson Pratt Drain

imageI’ve had the closed drain option twice, the tube is fitted through a hole in your skin to the operated area. The balloon section hangs down from your body draining fluid. No one likes having plasters/band aids removed from their skin but this is a whole other level of pain when removed. Imagine this, I’ve just had major surgery so I am pain free, I’m also on morphine etc so surely this won’t hurt. “They pull the drain out whilst you are awake” the nurse says, I replied “its embedded inside my abdomen”. The nurse continues” it’s ok I will just tug it and then it comes out”. As I had been through so much already I thought this is a piece of cake. Ohhhhh how I was so wrong, two nurses standing by my bed ready to do the act.  The first nurse pulled the drain and I felt like my insides were being ripped out, when she replies “it’s stuck” she then talks to the nurse station, when the head nurse says” don’t worry just pull it harder”. Hello I’m still here and very awake even after another dose of morphine. The second nurse grabs the drain to pull, she holding on to the drain like she’s in tug of war race.  By this point, the other nurse is holding my hand, what the hell. OMG the pain, when she pulled the drain it was horrific. I said never again, oh I was wrong there was another one when I had my liver resection and knew exactly what to expect. This time they injected the site in order to lessen the pain from my last experience.  That didn’t help me either to be honest. The drain experience has made me very apprehensive about every procedure since.

Last mental scar is my liver biopsy, I had this procedure just after my spine surgery, #3  and I was recovering in hospital, feeling ok and on the mend. By this time, I had so much fear from my first JP drain, everything I was going to have done was deemed to be on that pain level. I’ve figured I have become the most oversensitive patient due to my JP drain experience.

Waiting for the biopsy was making the whole experience worst, I then had the screens in front of me showing the tumours so I was going to witness the core samples. It just added to my fear and I was awake again but given a local anaesthetic.

Are you kidding me, the pain was up there, trust me. No one prepares you for that clicking noise, when the core sample is taken out and the pain after.  When I got back to the ward, they had to do me a cocktail of drugs for the remainder of the day to ease the pain. The following morning I was ok again, like it never happened.

Therefore scars are not always visible to the eye but can carry emotions that no one can see, only you. It’s not just cancer and treatment that you have to deal with, it’s a whole lot of other things too.  I’m sure many of us can relate to this in one way or another.

Have a great day 😄

 

Weekly Blog No 75 -Cornflake Tart

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Finished cornflake tart

In the UK, school children are provided with hot meals at lunch time if they choose. One of the most popular desserts was cornflake tart served with custard.  I’m not sure if it is served on the school menus now but it’s a very easy dish to make.

I am providing the recipe for you to make at your convenience. I did cheat and use a ready-made sweet pastry case. I have provided photos of a few stages.

Ingredients

Makes: 1 tart

  • 1 sheet ready-rolled shortcrust pastry
  • 115g golden syrup
  • 85g cornflake cereal
  • 55g butter
  • 25g dark brown soft sugar
  • 1 small pinch salt
  • 100g strawberry jam, slightly warmed

Method
Prep:15min  ›  Cook:25min  ›  Ready in:40min 

  1. Preheat oven to 200 C / Gas 6.
  2. Line a quiche dish with the shortcrust pastry. Trim off the excess around the edges. Prick the base of the pastry case with a fork.
  3. Place a sheet of foil into the pastry case and pour in enough baking weights/dried beans to fill the base. Bake in preheated oven for 20 minutes or until lightly golden. (You may need to remove the foil and beans and place back into the oven for 5 minutes).
  4. Meanwhile, in a medium-large saucepan, melt the butter, sugar, golden syrup and salt together. Once the sugar has dissolved, gently fold in the cornflakes, making sure that all the cornflakes are coated in the syrup.
  5. Remove pastry case from the oven, remove the weights/dried beans and spread the base with jam. Pour in the cornflake mixture and level off the mixture with a wet knife.
  6. Bake the tart for an additional 5 minutes or until just set up. Allow to cool slightly before serving with custard.

 

I hope you enjoy this dessert recipe, let me know what you think. 😊

Weekly Blog 74 – Medication

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On Monday, I was given some additional  medication to help with my cancer symptoms. Since my diagnosis I have been an avid collector of chemicals it seems. I am collecting medication like I have found a brand new hobby. It’s not exactly coin collecting or postcards. Its pills, powders and injections. I have small pills, large pills, blue pills, white pills, two-tone pills, capsules, tablets and powders, the list is endless. I have a storage of  injections in my refrigerator, which clearly shows I have no storage for wine.

I counted the other day that I take a minimum of 17 pills a day plus I have a further 4 meds to be taken at my discretion. If I did take the supplementary medication, I would be taking nearly 30 pills a day . That’s just ridiculous, I would be taking approximately 210 pills a week and 10,920 a year. Thank you NHS for supporting my pill collection.


Note to Cancer

Now cancer you have a lot of explaining to do, as a result of you I have a hobby I don’t want or even enjoy. The definition for hobby ‘ an activity done regularly in one’s leisure time for pleasure’. There you go, it’s certainly not leisure and those butt darts are far from pleasure. Isn’t it enough that you endure me with the disease notwithstanding chemical overload too. Yes you do provide me with different colours, sizes and shapes of medication, however I’m no longer interested in what they look like. Unless they taste of mint, toffee or are coated with trifle sprinklers for added interest. I would like to request a break from your ongoing torment inflicted on my poor body. Please consider my request.


The bottom line is, medication is used to make people feel better, reduce fever, pain and combat disease. No one enjoys taking medication and I certainly don’t or equally its side effects. I do have a choice but I chose to take the medication in order to extend my life and to not inflict any further symptoms. I don’t enjoy exposing my body to all these chemicals, nevertheless I can’t boycott them either. Therefore I will have become accustomed to rainbow coloured medication and its supposedly benefits. 

 Are you taking medication? How many a day?